Hello
My 18 year old son was just diagnosed with C3g
It was detected in a urine test at his 18 year old check up. We are in contact w Dr Nester and trying to decide whether to do the Novaris trial or start w steroid. He is on lisinopril now. It’s so overwhelming and scary
Hi Zevalouise,
I feel for you! Diagnosis can be a tough time, we were in shock for a long time afterwards. It's all such a lot to take on board, and yes it can feel overwhelming and scary.
Info finding was helpful for me as a mum - I needed to get some understanding, and at your son's age information may feel empowering to him too. We have attended various conferences which has helped my (non-scientist!) understanding. Talking - with friends/ family/ a counsellor about how you're doing, for you and your son - can be very helpful - it really was for us.
You are in touch with the best doctors which is great, so you'll be able to get the right up to date information and guidance. Experiences seem to be very varied. Our teenage son is fit and active on Lisinopril, and drug developments sound potentially positive for the future. (He's too young for trials so we haven't had to make that decision I admit.)
I wish you all the very best!
Tofflenutmeg
Thank you.
Hi Zevalouise,
Thank you for your post. I wish things were different for your son; receiving a diagnosis like C3G is very difficult to handle.
This online community is designed to support you. If you have general questions about C3G that are not answered by our pinned posts, please submit a question to the Expert Opinion feature. Also, the NKF website (kidney.org) has an enormous amount of information on kidney disease, much of which should be helpful to you.
Please stay in touch.
Best,
David
Hoping for the best. I was diagnosed with C3GN two and a half years ago at age 35 but believe I may have had it for over 10 years before I was hospitalized with a GFR as low as 22 . I was placed on lisinopril which even at very low doses caused extreme fatigue since my blood pressure was already on the low end of the normal range to begin with. After about 8 months of still having to take lisinopril I was switched to aldactone which can dilate the blood vessels and improve kidney function without lowering the blood pressure. It's important that you know the specific disorder, C3GN or DDD, before committing to a specific treatment. I was initially put on a high dosage of prednisone as an immunosuppresent before eventually being put on 2000 mg of cellcept /dayand a lower dosage of prednisone. At this point my GFR has been stable between 45 and 50 for around 2 years. The good news is if you've caught the disease early, the kidney's can recover and there will be limited scarring. I'm sure you've already had a cat scan done of the kidneys and a kidney biopsy but if not you should find a better nephrologist.
My daughter has just received a biopsy result of c3g we are due to see consultant to disguss this next week, she has extreme fatigue and high levels of Proteinuria, am just scared of the unknown was wondering if u could give any insight in what to expect I understand everyone’s different but any info would help
I'm sorry to hear about the diagnosis. It's been over 3 years since I was first diagnosed, my disorder is now in remission and I'm only on a small dosage of aldactone and vitamin d, but all of my other medication has been discontinued. My most recent GFR was 50 after being as low as 22 when I was first diagnosed. I believe the easiest way to reduce the amount of fatigue is to focus on limiting protein intake to 1.0 gram per kg/body weight or less. I weigh about 70kg to I try to limit protein to 70 grams per day. It's also important to limit animal protein and have a diet where you obtain most of your protein from legumes and vegetables. I've heard that avoiding nightshades may help reduce inflammation that may be leading to proteinuria, so I avoid peppers and tomatoes. Red meat has higher creatinine than chicken or fish and any meat, especially red meat will also increase her blood urea nitrogen (BUN) levels, which will directly influence how fatigued she's feeling. I've found that when I've cheated on my diet and have eaten steak or a hamburger I start feeling drowsy within a few hours and don't feel as well the next day. I would also suggest looking into a diet that has a higher omega 3 to omega 6 ratio than the standard diet. It's important to have a diet that includes fish, I prefer salmon since it has a lower mercury content and a higher omega 3 to 6 ratio. I occasionally have tuna, but I limit it to once per week since it has a higher mercury content. I believe the recommendation is to limit animal protein to 3oz per meal, so maybe no more than 9oz per day. Certain foods have caused more inflammation for me. I don't eat eggs any longer, unless they are needed in baked goods I make. It's also important to get 30 mins or more of cardiovascular exercise, at least 3 times a week, preferably more, since this has shown to reduce inflammation and increase oxygen in the blood and helps to dilate blood vessels. In terms of what to expect, it depends on age and current GFR and other results from the blood test. I had other ongoing health issues along with my kidney disorder so I had additional fatigue. At the time, the only known treatment for my disorder was cellcept, prednisone and a lisinopril or aldactone which can help dilate blood vessels and increase kidney function. I was also on bactrim twice daily since my white blood cell count was low making me more susceptible to infections. The lisinopril had many negative effects on me, since it's mainly prescribed for individuals with high blood pressure. Since I had normal blood pressure it dropped mine far too low and I was getting lightheaded. I know that women normally have lower blood pressure than men so if a doctor prescribes this medication I would suggest asking for alternative medications such as aldactone. If prescribed prednisone there are several side effects and it's an awful drug. I believe they prescribe 1mg per kg of body weight so with 70 mg daily I was more irritable, had insomnia, had an increased appetite so I was constantly hungry, and gained a substantial amount of weight, especially in my face and stomach. It tends to lead to weight gain in the face, stomach, and at time the upper back. Unfortunately I started to develop what's called a buffalo hump on my back, and fortunately my doctor was able to slowly reduce the dosage until I was taking only 10mg daily and all the side effects stopped. The cellcept could have side effects of insomnia, nausea, and diarrhea, and extreme weakness and fatigue. Unfortunately I had insomnia and extreme weakness and fatigue from the cellcept. I was so miserable I became suicidal at one point. I was extremely tired but could barely sleep and I could barely function for the first 10 months. I know many don't have as severe a reaction to the cellcept. For me, the thing that helped was spacing the dosage of cellcept out through the day instead of taking twice daily, I started taking it four times daily at a lower dose each time. I also started seeing a therapist to help with severe depression that I developed. Everyone is different so hopefully your daughter doesn't have as severe reactions to the drugs being prescribed, or is given another treatment that has been shown to be effective. Once my prednisone dosage dropped, and I spaced out the cellcept I began to feel much better. As my cellcept dosage was reduced, I started to gain my strength back and now since I'm not on it any longer I feel somewhat normal again, although I am still fatigued at times. My treatment was supposed to be only 6 months, but it continue for about 2 and a half years before any reduction in cellcept was made. I hope your daughters disorder goes into remission much sooner than mine and her GFR increases to a higher rate. Please feel free to send me a direct message if there's anything else I can help with.
Anyone participating in any of the 3 trials?